What Acceptance is Not

Parent A: I love and accept my autistic child just as she is.

Parent B: So you’re just giving up on her?

Acceptance is not giving up.

 Parent A: I love and accept my autistic child just as he is.

Parent B: How can you just do nothing? My son gets at least 30 hours of behavioral therapy a week plus all-day preschool and adaptive sports and OT and PT and . . .

 Acceptance is not doing nothing.

 Parent A: I love and accept my autistic child just as she is.

Parent B: I love and accept my child too! After 5 years of ABA, daily social skills training, and a star-chart-sticker-reward-gummy-bear-timeout-management system validated by an elite team of MIT scientists you can’t tell she’s any different from the other kids in her mainstream class.

 Acceptance is not what happens after you’ve fixed someone to your liking.

 Parent A: I love and accept my autistic child just as he is.

Parent: You mean you’re fine with raising a feral child who runs wild through the streets in his underwear, smeared in the remains of the chocolate bars he eats for breakfast, lunch and dinner?

 Acceptance is not throwing away all rules, manners, education, skills and coping strategies. 

 *

 I don’t know where people get these loopy ideas about acceptance. Perhaps from drinking the blue Kool-aid. The 40 hours of therapy a week, your kid will never amount to anything if you don’t fix them yesterday, autism is a tragedy Kool-aid.

 The be-very-very-afraid Kool-aid.

 The blue Kool-aid is convenient. It’s right there when your child is diagnosed and it goes down quick and smooth at first. Fear isn’t something we have to work hard to understand. It’s visceral and always close at hand.

 Acceptance–that’s a little trickier. It requires some legwork. You have to go in search of it.

 The problem with the blue Kool-aid is that it’s poisonous–like drinking seawater when you’re marooned on a deserted island. It might seem like a good idea at first, but the more you drink, the sicker you’ll feel. You might tell yourself that it’s your best option–just for now. After all, there’s a whole ocean of seawater there, easily scooped up by the bucketful, and it kind of makes you feel less thirsty, at least for a short time.

 In the long run, fresh water is essential to survival, but finding it will require planning and hard work: climbing a tree to pick coconuts, setting up a system to gather rainwater, walking inland to find a stream or a spring. There’s no guarantee any of those things will work, right?

 Risk, planning, hard work . . . I can tell you from firsthand experience that those are all part of getting to acceptance. Not the easiest option, but it’s worth the effort.

 *

 People often talk about acceptance as a kind of finish line and that couldn’t be further from the truth.

 Acceptance–of yourself or of a loved one–is a starting point. Acceptance is where we take stock of the good, the bad and the ugly and find that we’re okay with all of it. That we can love all of the parts, right now, today. Not next week or when we fix just this one tiny thing or as soon we get that other thing under control.

 We’re okay with all of it, just as it is.

 How is that not giving up???  you may be wondering. How is that different from doing nothing?!

 Because it’s not the finish line. It’s a starting point. From a place of acceptance, we can build coping strategies and learn new skills in a way that improves the quality of our life.

 Isn’t that the same as behavioral therapy and fixing people?? You said that’s not acceptance.

It’s confusing, I know. Maybe an analogy will help.

Imagine a firefighter about to enter a burning building. To have the highest odds of success, he or she needs the right tools and protective gear. No one would expect the firefighter to magically grow fire-resistant clothing and an oxygen tank (fixing); similarly, no one would send the firefighter into the building without his gear (doing nothing) or tell him to simply quit being a firefighter (giving up).

It’s time to let go of the false dichotomy that our only choice is fixing autistic kids or giving up and doing nothing. Fixing often has the goal of making autistic people indistinguishable from their nonautistic peers. In the long run, it creates a feeling of brokenness. Just like drinking seawater to slake thirst, it’s ultimately poisonous to the system.

Learning new skills and building on our strengths equips us to cope with life’s challenges,  while giving us the space to continue being our autistic selves.

And that’s how acceptance works: I get to be me and I struggle less.

50 thoughts on “What Acceptance is Not”

  1. I LOVE this post. Thank you for articulating my thoughts so well. I don’t have children but can relate to the process of acceptance for myself, having been diagnosed just a few months ago. Thank you for sharing.

    1. Thank you. When I first diagnosed I started from a place of “oh, now I can fix myself!” and gradually came around to acceptance. So yes, this applies to more than just parenting autistic children.

  2. This is truly a great post. My husband was born in 1953 and his mother thoughtfully raised him to be a fine man. His autism has blessed many people because of not in spite.

  3. …. this was a great topic – I enjoyed reading it. (I also super-enjoyed readin’ about your triathalon!)
    … on acceptance of a child …
    I think I speak for many parents – no matter what your kids are diagnosed with – even if they are considered perfectly normal – I want all the best for that kid. Both my daughters have made some life choices I did not hope for them – but I will always love & accept them because not only are they their own persons, but they will always be mine.
    Until they were grown enough to make their own decisions, I did my best to equip them for survival on the planet, in many areas of life. Sometimes Iaccomlished this overwhelming task by clearly modeling my own mistakes – lol this way they learned things NOT to do …
    As a person with aspergers … I think I probably worry more about them accepting me … they accept me mostly – but theyre pretty intolerant of some things.

    Fully accepting a child involves every possible part of your human capabilities … just a few I think.of:
    protection, patience, attention, hope, letting go at the right times,
    I fell short of these things.
    Most every parent wants to nurture their child to develope their individual potential. Recognizing what that potential is, AND understanding HOW to best develope that child is the really difficult task.

    1. I love what you wrote here about how challenging acceptance can be and how much it stretches us to truly practice it. As parents we each do the best we can, often avoiding one mistake while making another that we completely didn’t see coming. I think your children are lucky to have such a thoughtful and caring parent.

  4. I completely agree that the conscious practice of non-judgemental acceptance of self and others is the recipe for a full and rewarding life. It is truly a discipline and not an automatic-pilot way of life,mespecially when you’ve grown up with the “carrot/stick- achievement = value paradigm). Resilience is likewise a challenging daily choice to make/model; I find that I slip into the “fear/fix it now” mode when I see my autistic child entering socially painful experiences and feel the urge to protect. I have to remind myelf that it is also a newer, say corollary, paradigm that conflict/disappointment/disagreement/misunderstanding and the like are “to be expected,” and not to be “avoided, fixated upon before being swept under the carpet of shame (which had been my natural instinct/training growing up. We must allow ourselves (and our kids) to learn as we go through life’s recurring social-storms, much of it won’t be pretty, but nonetheless, what matters in the end is that “we can handle it!” Indeed, it is important to remind ourselves of the seeming platitude that most obstacles in life are “small problems” that need not distract us from life’s joys.

    As I write this, I think about my autistic first-grader’s challenges of the past week: crying because his “girl friend” wanted to play with someone else at recess, cited for “pretend punching” another student whom he found annoying, lost 5 minutes of recess because he refused to work during reading center (where the books reflect neither his area of interest (ghosts, villains, Lego Batman, etc.) nor his level of intellect, yet he struggles to read because it takes alot of effort; tantrum in library because he wanted to check out “Encyclopedia Horrifica” and “GooseBumps,” and not a book “at his level”. I can’t say that I want my son to grin and bear it, conform to an educational system, and greater world, that does not match up easily with an autistic orientation. But, we try to show him how to find some middle ground, and work with it; I’m translating GooseBumps into the language of my son’s sight word list, and he’ll need to do his part and actually read it, maybe illustrate it. We try to tweak it. Try and try again, that’s how we roll here! Hopefully the process will be meaningful to all involved.

    One last comment about the “40 hrs if therapy”: we’re doing that in our home, and it is really helping out family. I see it more in terms of “it takesi a village,” and I can’t do it all myself. If it weren’t for a third party coming into our home, I would not have a much needed breather; the therapy has fostered significant independance for my son, and has helped us exit patterns of behavior (like co-sleeping) that no longer worked for any of us. The therapist has been a Godsend to us in many, many ways. The therapy has scaffolded growth in us all, and if we hadn’t gone through the initial “phase of fear,” we might have convinced outsekves that we could manage without it. There’s no shame in taking the blue kool-aid if it results in positive growth!

    One more thought! I have to stop myself from falling into the snobbery trap of finding people with autism much more interesting thinkers and individuals, than “neurotypicals.” I see autistic traits all around me as positive. Acceptance opens up new ways of seeing the world for the better!

    1. A purely practical response to the previous comment – I have a son who is Lego and skeleton/monster obsessed and we eventually found quite a few early reader books with those themes.

      Funny Bones series – a big skeleton and a little skeleton have adventures:
      http://www.amazon.com/Funnybones-Janet-Ahlberg/dp/0140565817

      Lego/DK reading book series – there are many of these – they also do some super heros but he sounds like he might like the monster fighters one:
      http://www.amazon.com/DK-Readers-L2-Fighters-Monsters/dp/0756698472/ref=sr_1_1?s=books&ie=UTF8&qid=1410986368&sr=1-1&keywords=lego+monster+fighters

      I’m in UK but these look like they are on US amazon too.

    2. You’re right, the parental urge to protect our kids is very strong. I remember especially those vulnerable years when my daughter first went to school. She seemed impossibly small and young to be out in the world by herself without me there to make sure she didn’t get hurt physically or emotionally.

      She’s 26 now and just a few months ago she thanked her dad and I for letting her make her own mistakes in life. She said she feels more mature and independent than a lot of her peers because we gave her so much leeway to make her own decisions as she was growing up. It’s hard to see them hurting but as you said it’s a part of life and one that makes us stronger.

    3. I have difficulties speaking, so reading out loud has always given me problems. Unfortunately in “school” if you struggle when you read out loud, they think you can’t read well at all! I was stuck in the lowest reading group with the simple stories, and I was bored out of my mind! I frequently sneaked the higher level reading texts into my school bag so that I could read them at home! My reading comprehension was more advanced and the teachers were always surprised when they got my standardized test results!

      P.S. I was also quite fond of reading the Encyclopedia! LOL

      1. I’ve always dreaded reading out loud and now I’m grinning at childhood you sneaking the “hard” books into your bag to read at home. Poor kid.

        I loved reading encyclopedias! My parents also bought me a set of kids “about all the things” books and I devoured them. It was like 15 books, with one on nature and one on space and one the body and one animals, etc. Plus they were rainbow colored. 😀

        1. I really want a set of Encyclopaedia Britannica but they don’t do the book version any more and the last set in 2010 are selling for £000s 😦 Mind you, I haven’t got the bookshelf space available!
          And I hated reading out loud too. I spent my school life keeping my head down in class and hoping not to get picked, only to find that in the 6th form (the final 2 years of school) we had to read round the class in my Classical Civilisation class so I couldn’t avoid it. It totally ruined the class for me.

  5. I will now take the opportunity to ask:
    What does “Drinking the kool-aid” mean and do you know where it comes from?
    I’ve seen it quite a few times by now, but never in a context where I could fully guess what it would mean. (And I don’t think I can appreciate the article – which I find great already – sufficiently without understanding.)
    Looking it up only had unsatisfactory results.
    Help me?

    1. Drinking the Kool aid comes from the event where a cult leader convinced his followers to commit suicide, by drinking poisoned kool aid, because aliens/God will then be here to pick them up and take them to paradise. The leader himself never did drink his own kool aid.

      The reason this author says “blue kool aid” is, I believe, that’s the color for Autism Speaks and their Light It Blue campaign. Autism Speaks is well known for their fear tactics when talking about autism (with the goal of increased funding, as many marketing plans include that. It’s successful).

    2. Heather explained it perfectly, right down to my “blue” reference. It has rather grim origins but it’s become an American English colloquialism so familiar that I think few of us give the original incident a second thought when we use it, which is a bit disturbing now that I think of it.

  6. Good advice for any parent when you encounter somebody judgmental and/or competitive. Not every little boy is going to be a sports star, and not every little girl likes to play with dolls. My parents sure didn’t force me to, they let me indulge in building blocks, but they certainly had some opposition from the judgmental parents because I didn’t act like a typical little girl. They may have let me play in the dirt and stuff, but they still worked on instilling things most would view as women’s work like cooking and cleaning, but it’s hard to deny those are useful skills everybody should know.

    1. Everyone should know how to cook and clean for themselves, it’s true. 🙂 My parents gave me dolls and a baseball mitt and Hotwheels and a punching bag and a dollhouse. It must have been quite an eclectic mix but I never realized it until much later.

      1. That’s just good parenting in my opinion. My parents did the same thing for my brother and I, anything that stimulated play, imagination and learning should be considered a good thing. I don’t know why you would attempt to limit and block your child’s play just because of old fashioned ideas about their gender. In particular, I loved trains and my brother had a rag doll that he played with when I was born, so he could emulate my mother!

  7. This isn’t about this blog post (haven’t got round to that comment yet) but the nice courier from Amazon has just delivered my brand new copy of Nerdy, Shy and Socially Inappropriate!! And while I’m supposed to be ultra-busy catching up on my to do list for today (plus yesterday’s didn’t-get-done list) i kinda felt the need to read the first page. And the second page, and I’m only pausing now because I felt the need to say ‘you’re describing me too’! Albeit without the child or husband. But me nonetheless. And that is so reassuring because, while I’m still waiting (hoping) for the official affirming diagnosis (got an appointment date finally – end of next month) there are times when I think that I’m not going to be seen as having Asperger’s because outwardly I can pretty much pass as ‘normal’, just weird with it. But I know what I’m like and what I am. Anyway, I just wanted to say thank you because it is important. And thinking about it, it’s about acceptance so I am being vaguely relevant 🙂 (and emotional with it – typing with blurry eyes!)
    Finding this blog and the people on it was probably one of the best things I did.

    1. Yay! This made me so so happy. You’re very welcome. Thank you for being such an active and positive contributor to the blog. I always look forward to your comments and I appreciate how kind and thoughtful you are in your replies to other people’s comments. 🙂

      You’ve seen the book before I have, you know. I won’t get my copies until Oct when the US version is released.

      1. Thank you back 🙂
        There are some bonuses to living in the UK then?! Amazon very generously moved the date forward a couple of days too – they obviously knew I was getting excited! I’m now half way through (shame the study notes I was supposed to be reading this afternoon have now been put aside and rescheduled but I like to think I can be flexible when needs arise!!)

        1. Argh! Why hasn’t mine arrived yet? So very jealous!

          Liz, I too worry that I would not ‘pass’ the diagnostic tests, I do a pretty good ‘mildly eccentric, slightly unpredictable’ public persona. I know what I am, but the prospect of being denied a diagnosis terrifies me!

          So I’m glad you’re finding the book reassuring. Good luck with the appointments and all that…

          1. It’s sheer favouritism 🙂 And the amount I spend on Amazon too!

            It seems crazy that the opinion (and that’s all it is) of one medical person could make such a difference, because let’s face it, who knows me better than I do? But he’s had my 18 pages of thoughts on why I’m an Aspie to read in advance so here’s hoping 🙂

          1. Well given that your blog posts are so well received I wouldn’t think you’ve anything to worry about! (But then worrying is what we do so well..)

    2. Hi Liz,

      I had all those thoughts before my assessment earlier this year (also in the UK). I can do a very good “normal”, I have been practicing for over 25 years after all! But the clinician knew her stuff and that didn’t matter at all. In fact the degree of conscious effort I needed was part of the evidence she used.

      I really hope you get the answers you need. Self acceptance is a wonderful thing. A peice of paper helps, but it’s really our attitudes to ourself that matters. Good luck! I’m sending you good wishes/virtual hug/good vibes.

      Finding this blog was probably the best thing I did while waiting for assessment. I must order the new book.

      1. Cheers for that, it’s good to know. Very reassuring. And you’re right, it’s my knowledge and attitude that matter. But if I decide to tell my folks or people like that I think I’d only feel confident with the bit of paper – otherwise I’m sure they won’t (want to) believe me. Oh well, 6 weeks and the appointment will be done and I can go from there either way.

        1. I just wanted to share that I too went through the assessment (in Canada) this summer and received my formal written diagnosis of ASD in the mail just last week. I had a strong impulse to write a long drawn out list of all of the reasons I thought I might be on the spectrum (actually I did make the list I just didn’t give it to the psychologist in the end).

          Waiting was hard, as was deciding to go through with it, but it was worth it in my opinion because it removed the doubt, which I struggled with. The psychologist I chose asked all of the right questions and, interestingly, covered most of my long list.

          I too needed the piece of paper to feel comfortable telling certain people as I don’t always come across as anything more than quirky. Also there are things that I would like to do with my life (go back to school when my kids are older) and the accommodation that comes with the piece of paper will be helpful down the road.

  8. this is the best articulation i’ve heard of this topic…so helpful, i’m always looking for ways to get this point across, now i also have a link to share, thx so much for this. you and your writing: a gift.

  9. Although born a little too early… they did put me into physio therapy when I was young. They said it had something to do with my handwriting. I think I would have gotten a lot more out of it if they had actually told me why I was there and what goals they were trying to achieve. Of course “Asperger’s” didn’t “exist” in Canada in the late 70’s.

  10. Thanks for the thought provoking subject.
    Knowing about ASD and my position on the spectrum is a recent discovery, so I had 30 odd years of being a pretend NT and for the most part not liking myself that much, or at least not liking my response to many situations and the consequences of those actions. However I grew not to be bothered much about other people accepting me, other than the wife! So for me it has become more about self acceptance.
    This article has prompted me to revisit those occasions in my past that haunt me and now put them into an ASD context.
    My findings are that I can understand and accept them better so there is less that haunts me now.
    A BIG plus that to me is more important than whether anybody accepts me or not,as it increases the quality of life, my own and as it turns out my wife’s as well.

    1. I think for adults self-acceptance is huge and a big part of being able to accept yourself is the messages that you’re raised with. As you said, having to pretend that you’re something you’re not can leave you feeling pretty bad about yourself and your abilities.

      It’s great to hear that you’ve been able to reframe some difficult things from your past. Doing that helped me let go of a lot of pain and I’m nodding at what you said about quality of life and your relationship. 🙂

  11. Liz I enjoyed reading your comments … i also neec to get that book you mentioned!
    This topic of acceptance & what it is & isnt seems to automaticlly merge our thoughts on our own upbringing & bringing up our children.
    Since I only recently (last few months) began to understand Aspergers, it has been explained a LOT of things about my childhood & early teen years.
    I was aaccepted & completely rejected at the same time. I was also adopted as an infant by middle-aged parents – im sure as I grew they wondered what in the world they plucked out of the bassinet … as I am highly imaginative, extremely creative, and overtly blunt.
    I am extremely visual and see everything that is said in pictures, which causes literal images even in common sayings – such as ‘drinkin’ the kool-aid’ And I’m a literal, logical thinker. As with all such sayings, I had to be told what the concept illustrates. (I know most of them now at my age, but I still see a picture of the famous kool-aid smiling pitcher pouring a glass of red kool-aid. If you mention a colour or flavour – I will instantly see it – ANYway – I said all that to comment on acceptance – bc of this new understanding of myself, I can relax, I am less self concious – because, all my life I have constantly been reprimanded for always saying, doing reacting incorrectly – you all know – laughing out at the wrong time bc you got such a vivid image of the speakers illustration – but the topic was sesrious … school kindergarten – the first few months of the 11th grade was a total fiasco – thats all I can tell you about that – I was an accelerated reader from.the start but I never fit in any group or clique at all. I was an alcholic & etc by 13 – quit school, left home at 16 – lived 600 miles from.home and was still.socially inept – very self concious – still so in a group of more than 2-3 people I know well – UNLESS we are all playing guitars – then I’m just another person in a group of guitar players.
    If I have a dinner party or go out with friends – I always feel I want as many people to come as possible bc they will create more things to discuss or discuss various topics with one another. I mentally prepare by telling myself i will LISTEN a lot more – but then i always end up inserting some extremelty logical viewpoint that seems to ruin everyones ability to be light hearted or live in la-la land, OR i go on & on about art or creative ideas until I remember people find this too mentally taxing, OR others engage others in what I feel is shallow drivel and I.just sit there looking around at colours or noticing every little sound, noise, & voice in the entire room … then I start feeling self-concious and ridiculous. I know – I remember. This topic is about acceptance.
    I am learning to accept myself.

  12. Reblogged this on Melissa Fields, Autist and commented:
    Acceptance is not giving up and turning your back on me because i am a complex soul…it is not what happens after you have fixed me to your liking…..acceptance is loving me as i am today….and letti g me go at my pace….letting me have my routines, my quirks, my hang-ups, not getting mad and treating me like i am having a tantrum when i am melting down because i have just reached my limit. Acceptance is loving me unconditionally. Thank you for writing this!! 🙂 ❤ ❤

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